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Then last year just walking around school became a painful struggle. Mrs Kelly, 56, said: ‘When Danny’s condition took a big turn for the worse last spring – that was when I went through a real crisis.

‘I’d always had in my head that he might need a transplant one day – but I suppose I was thinking that would be when he’s 30 or 40. To find out that was on the cards at a much younger age was very difficult to deal with.

‘None of us are under any illusions – this is something that Danny does need urgently.’

Danny, like his father and sister before him, has dilated cardiomyopathy, a disease of the heart muscle. It means his heart now functions at only 10 per cent.

Daniela Kelly’s daughter Emilia (left) died before her second birthday while Daniela's husband Tim (right) was also killed by the same genetic heart disease

Mrs Kelly said: ‘After waiting so long, it’s hard to imagine it happening. When the call comes I’ll be very frightened. Having been there twice before, I know what that feels like, which is almost worse.

‘But when I look at Danny I see a young man very constrained in what he can do. A new heart can enable him to step out and have normal active life. And that means everything to me. That’s all I want.’

Emilia was diagnosed with the disease 36 hours after she was born. Her breathlessness left her unable to feed, and she was regularly in hospital with chest infections.

In 1992, when she was 19 months old, she took a turn for the worse and was given two transplants within hours but died in the operating theatre.

Only a year later, Mrs Kelly had to watch her husband go through a heart transplant after his health rapidly deteriorated.

The operation was successful and Mr Kelly, who had served as a lieutenant in the Queen’s Lancashire Regiment, enjoyed a full and active life for the next 12 years.

It's a huge operation

But he died in 2005 at the age of 43 when his body unexpectedly rejected the transplanted heart.

Danny now faces the same traumatic journey. He said: ‘I’m worried, because it’s a huge operation and things can go wrong – but it’s also my only step to get better.’

Research published yesterday for National Transplant Week revealed that a third of UK adults have never considered organ donation.

In 2014-15, the number of organ donations fell for the first time in 11 years. Three people die every day on the waiting list for a transplant.

Danny said: ‘It’s hard for people who aren’t in my situation to understand, but you have got to know how much difference your organ could make one day.’

Overall, 93 per cent of heart transplants at Papworth Hospital are successful. Dr Clive Lewis, Danny’s cardiologist, said: ‘Danny could potentially be healthy enough to go to a gym and do full exercise like everyone else.’

Despite his illness, Danny passed three A-levels this year in psychology, biology and geography.